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@laura98: Glad to hear the dosage can be upped where you live. The maximum allowed dose where I live is 5mg/kg bodyweight every 4 weeks, I was on that dose for several months without effectiveness, it was not the right drug for me. Fingers crossed you get back into remission with Remicade.

I have been feeling that way anytime when my disease became more active and there could not been found another reason (iron levels fine, blood work all right, but more inflammation in my body, as my rheumatologist could see via ultrasound of my joints). Apart from that, the loading dose of...

As far as I know and see from personal experience and what I heard from friends with IBD and from my gastroenterologist, there are two types: Those who have always been lactose intolerant from childhood on and those who developed lactose intolerance duet to inflammation especially in the small...

I haven't come across these symptoms as extraintestinal symptoms of Crohn's, I'm sorry. What medication are you taking, @ConfusedCrohns?

@my_little_penguin: Has DS been checked for SIBO? SIBO can also lead to osmotic diarrhoea, as far as I know. I haven't heard of the indication of IBS for Rifaximin, where I live it's only allowed for SIBO and officially only for traveller's diarrhoea, any other use is off label. I'm aware that...

For me Buscopan is quite helpful but cannot control the cramping 100% when it's really bad. And I only take it when I'm close to dying ;-) so maybe it's even more helpful when taking it BEFORE things get unbearable.

Hi Lauren, I've been on a 14-day-course of Xifaxan/Rifaximin (and I started a thread as well, so -@Ronrush7, maybe it was me you were thinking of?) and it definitely DID make my Crohn's way way worse. Just to keep that in mind that this IS possible and I'm not the only one. At least one person...

I have quite similar issues from time to time. I was convinced it was from gluten, as it came back when I accidentally ate gluten (went gluten free for a while without being celiac), steroid creams always help with any eczema. My nutritionist made me eat spelt again, as well as oats, and it did...

Hi Sean, welcome to the forum. Sorry to hear you are not feeling well for a long time already. Have you come across the Arthritis Support Group here in the forum? There are quite a few who are affected by enteropathic arthritis, including myself. There is a lot medication out there already and...

For me, any steroid helps with fatigue, so did Entocort, same with Cortiment/Uceris and Prednisolone, of course.

@Lizzie Thank you so much for sharing, Lizzie! That goes in the same direction, as I was cutting out so many foods in order to minimise symptoms and now kind of have to eat them again, according to my meal plan, but, well, my body seems to have lost interest in any food and even the memory of...

I sometimes have light dizziness when I have a problem with my neck muscles or just when I am on steroids, also while I'm taking Uceris/Cortiment (BudesonideMMX), or when I did not sleep enough, so many possible causes.

@Jomo73 Is it certain that it's ankylosing or fusing already or is it “just“ inflammation? Do you know which part of the spine is affected? My sacroiliac joints are inflamed, but not fusing, normal spondylitis though. Aza is not working in the spine btw, only MTX, Aza would only make sense...

@DEmberton Sounds a lot like mine currently. Have you seen a rheumatologist? The only “advantage“ that I see in having extrainstestinal symptoms is that you have another chance to monitor the effectiveness of medication by doing ultrasound of the joints. I thought my previous biologic would...

Thank you guys for your feedback so far! Interesting about your eyes! It's a bit weird to me anyway, as I can't really make up a reason for this overall change, I haven't been a low carber recently (tried it for a few weeks, ages ago, even before diagnosis) and don't crave certain foods...

I had that sort of doctor in between as well, is there any option to see another doctor? Feeling trusted is so important as it's very hard to always perform all the tests, colonoscopies, MRI's etc. If your doctor trust you and you can trust him in return that would probably be much easier and...

I was in the same situation for a long while, avoided eating, not so much drinking, and felt less symptoms, well sure, as the intestines don't have much to do, they feel pretty okay, at least better. In fact, it does not help the inflammation itself, it just provokes less symptoms. Have you...

I came across someone from the US who takes Xeljanz for her Rheumatoid Arthritis, she also has Crohn's and it helps very well with both. Just to give you an update on that, so new medication is on it's way being released for Crohn's, hopefully very soon, fingers crossed.

I exchanged some Modulen with someone from my local support group, on a private basis. She did not take any money for it. I don't think that it's legal to sell Modulen anywhere.

For me, it's not the case, but it can be for you. I would say it's different for everyone. For some calprotectin is very useful for monitoring. My doctor pays more attention to my symptoms rather than lab results, I find it especially helpful to have an ultrasound of my ankle or toe joints as...